Wednesday, March 4, 2009

My brother in law Ryan e-mailed Jason about a friend who had a son with autism, they wanted his story and what we did that worked. I put together this e-mail tonight and thought I would share it with you as well. I love you all and thanks for all the support you have given our family regarding this.

Brief Summary of Wilson's Autism Story

We found out when Wilson was 3 years old. At his 3 year old appointment and my babies 2 week appointment, our pediatrician told us we should get him tested. He was tested, up at CDC, and diagnosed with PDD-NOS.A list of symptoms…Could name every letter and the letter sound, but did not know his own name, or even mom.When asked who I was he would just say the color of my shirt, when asked who he was, he would say Thomas, since Thomas the train was always on his clothing.When he cried he would hit his head against the wall, floor, concrete, etc.Lined up all his toys.When visitors came over, he would ‘hide’ in my room and watch a DVD.He would only wear pj’s. Huge clothing issues!He would rub my (or anyone’s) skin, all the time.Very picky eater.Didn’t like to play with anyone.Didn’t speak very much, would answer black and white questions. Very little spontaneous language, never asked questions.I didn’t notice until after learning, but he had poor eye contact, wouldn’t look at people as they entered a room.Had a new baby brother, and wasn’t happy or sad, just pretended he didn’t exist.Wouldn’t potty train.Could play computer games for 8 hours if we let him, but couldn’t sit 5 minutes at the dinner table.

We meet with initially with Dr. Jones, and then with Dr. Carbone. Dr. Carbone gave up very good information on what autism is and what therapies he liked. I wanted information on ABA, RDI, and Floortime. He was wonderful and explained all three, (he has an autistic son and knew personally about each therapy). He recommended that we do a minimum of 20 hours a week of combined therapy. Up to this point, Wilson had been in a weekly neighborhood playgroup that was turning into a 3 year old pre-school. We quickly enrolled him into the public school pre-school with combined speech therapy. Dr. Carbone told us about a great private pre-school, Kids World Pre-school. We enrolled him there as well and kept the neighborhood preschool. We meet with an OT therapist and we started the brushing program, which made a huge impact on his rubbing peoples skin, and probably with food textures. We then meet with Tara Moffit an RDI therapist who explained the program and we felt it was a great fit for our family. It is a parent based therapy where we meet monthly with Tara and we are given specific weekly assignments that we were to work on with Wilson. The goal is to retrain the brain to master skills that a nero typical infant develops. The very first thing we had to do was to stop asking Wilson so many questions. Since he rarely spoke spontaneously we often asked him questions, such as ‘What color is this, What letter is this, Who is in this picture? What do you want to eat, etc….’ Asking questions all the time was a way to prove to us that he was improving and to reassure us how smart he was. In RDI we learned that we need to slow down and instead of asking questions we need to make thoughtful comments where he was not required to answer, but are thought provoking. Instead of ‘What color is your shirt’, we changed it to, ‘I really like Thomas the Train, green is my favorite color.’, which starts the idea that other people have opinions, and with no pressure to perform they enjoy being with and interacting with you. RDI taught us to be better parents for all of our kids, when we changed he changed. As we got more committed to RDI one thing we needed to do was simplify his life. You would never expect your neuro-typical child to have to endure 20 plus hours of schooling/training a week. We pulled Wilson from everything but the one private pre-school. We spent that time working with him doing RDI activities which is almost play like, very natural. We also started The Listening Program (TLP) which we saw huge improvements after we hit the 4th week. We did change his diet which was very hard, I decided not to do the gluten free, we had him tested for celiac diease and was fine, and after research decided that it would affect his health (and his quality of life) more by taking the only things he would eat away. We did end up taking milk away, we used rice milk and chocolate soy, it was hard but we did notice that it helped. Well really, I didn’t think I had seen a big difference until I gave it back to him, after he had been off for a couple of weeks, and then instantly he reacted badly by reverting to old behaviors. After a year we gradually added cow’s milk, we haven’t noticed any problems, but we are still nervous. Wilson is 5 almost 6 years old and is in “normal” Kindergarten class. He is very social he has 3 standing play dates every week and other kids keep asking to play after school with him. Some things that other people don’t see as a success (but I know you will)… He loves and begs to play with friends. He plays using his imagination. He plays with toys in appropriate ways He tries new food (5 bites because he’s 5) Changing his clothes is fun. He loves music and he will write his own songs. He’s affectionate, kind and gentle. He tells me that he loves me. He will communicate from across the room by only using facial expressions. He will read my face and know in an instant what I’m thinking. He is worried about what other people think of him. And yes he has even lied!

Tara, our RDI therapist thinks that if we had him re-tested that he wouldn’t even have a diagnosis. Wilson is my hero, but I have learned that autism is a gift, I just needed to slow down to see it. I remember when he was first diagnosed and my world felt like it was going in hyper speed yet my body would only move in slow motion, I would have resented someone telling me to slow down and enjoy Wilson, when all I wanted was to cure him and capture this window of early intervention. I believe that I was led to the path that we needed and I will be forever grateful for this experience and look forward to what the future holds.

3 comments:

Thanks for sharing your story Amber. That is amazing that Wilson has improved so much that he might not even have the same diagnosis now! I hope your story will help me appreciate all of Kate's sometimes frustrating behavior!